We took Ellie in to see our favorite peds dr in this local area and filled him in on everything that has happened since her surgery and the results we have gotten back to this point. I even let him know that since we are STILL waiting for the Neocate to come in through the insurance I was able to get some cans of formula through a medical exchange group just for the cost of shipping to get her started earlier. He was really impressed (one box arrived today!!!!).
We talked about her sore throat and low energy issues. He thinks part of this is due to her healing process and part due NPO status. We need to increase the saline nasal sprays, and the saline neb treatments as this will increase moisture to nose and throat.
He really feels once we get her off the soy based formula and on the Neocate some of this will resolve. Unfortunately, due to her complex medical issues he said to expect the waves of energy and exhaustion to continue. He was not surprised or worried that she has lost weight again especially with us just doing another bowel prep, and said that is most likely why her tummy feels so much better and the distension is almost all gone today.
The strep culture came back negative. She does have swollen glands again so he thinks something viral got her. I let him know my instructions by John Hopkins was to give the hydrocodone and mortin as soon as she complained of pain and motrin if we noticed fever. Then about 20 minutes after giving the meds realized I should have taken her temp before giving meds NOT just feeling and giving meds when I realized she felt hot.
We talked about her tummy issues and how I immediately took her off the formula, put her on pedialyte and started the bowel prep cleanse to reduce her stomach distension issues. I let him know that today she is staying on the pedialyte the rest of the day to let her body rest and finish recovering, then was going to try formula again tomorrow with the hopes of starting the new formula tomorrow. He wants me to start introducing the formula in small bolus amounts with the pedialyte and if she shows not reaction then the following day then move straight to Neocate. Get her off the soy because she is clearly continuing to react to it and he will help us work through any change over issues.
Her peds dr totally amazed on how much miralax her body needs to maintain normal bowel movements and how often we have to do bowel preps (and how much miralax we have to use) on her as if we were getting tests run just to clean her system out. she gets 3 cap fulls every morning. We have tried to separate the Miralax out throughout the day but if we do then she is not having any bowel movements during the day only while sleeping. If we give all in one dose then she has normal bowels during the day and none while sleeping.
He is puzzled by the fact that we start the bowel prep early in the morning and finish before noon and nothing happens until somewhere between 3-5am when she is sound asleep and her body is fully relaxed then suddenly everything slowly leaks out. Not an explosion or anything just a slow leak. She will totally overfill her goodnights pullup and flood her bed. The weirdest part is like her whole body has to be fully relaxed before this process can work.
I think that covers the important parts of the apt today...
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